To Nor Cal Lymie-questions about your dx

sueg

Veteran Member

Joined : Aug 2013

Posts : 718

Posted 2/5/2014 9:41 PM (GMT 0)

I read your post from yesterday and was interested because I too had an LP and the results were negative for MS but I have w/s on my brain scan so that makes this trickier. And I have gotten even more new symptoms which could be either disease! I ask the Neuro about LD but he said that was negative from the standard lab test. (It really had 2 bands showing whatever and was equivocal).

The Neuro that I see is leaning toward MS but doesn't yet say this. And he wants me to have another brain scan to see if there is more demyelin. I am waiting to schedule this because if this is Lyme then we can start there. And I will see a LLMD in 3 wks.

Were you surprised by the Lyme diagnosis? And how did you get so lucky to have a doctor who really seems to care?

Nor Cal Lymie

Regular Member

Joined : Jan 2014

Posts : 31

Posted 2/5/2014 10:41 PM (GMT 0)

You know, from the moment they mentioned MS I just had a gut feeling I didn't have it but I knew I had something. It was from seeing Yolanda Foster on The Real Housewives of Beverly Hills that the idea of Lyme got into my head. I really think my doc was just humoring me when he ran the test but thank heavens he ran it. From what I recall (I was pretty out of it at the beginning of all this) He told me my original blood work did not show Lyme.

After he ran the Lyme tests, which included tests for co-infections, I cam back with all 3 bands positive in the IgM. He truly sounded shocked and did encourage me to see the MS specialist anyway. She confirmed the lesion on my brain but showed me on the films that it was not in the location that MS lesions tend to appear. She basically said that it was unknown why I had the lesion. She was the one who also discovered the meningitis on my MRI, which was missed by the first person who read it.

I was nervous to have the LP, but I feel my intuition had really been guiding me through this whole thing and I just felt there would be some answers there. I am well aware Lyme doesn't often show in spinal fluid but because my symptoms were so neuro, I hoped they would find something and they did. Just one positive band but between the blood results and that, it was enough to start IV Rocephin the next week.

It took only 6 weeks to get diagnosed and I have been in treatment for 5 weeks now. As for lucking out with the doctor, I am just stunned myself that he has been so awesome. He's been my doctor for over a decade and the reason I always liked him is because he is always up on things, always learning and staying fascinated in medicine. When my husband passed away last Spring he was amazingly supportive.

My only advice would be, listen to that small voice deep inside of you. Trust me, I felt so silly asking for a Lyme test because I saw something on reality television. *lol* I believe we all have an inner guide and when we get quiet enough and listen to it, we get good direction.

I see it here on the forum a lot. Someone will stop a med because they just feel like it isn't for them, or will get a second opinion because something feels off with the first one. Education and intuition are what I hold on to and so far, it seems to have served me well.

All the best to you, sueg. I will pray that you are drawn to the right people and get the care and attention you deserve. :)

✚ New Topic ✚ Reply